Me and my MS nurse: Tomas and Anneka
Tomas on Anneka
When did you first meet?
I met Anneka eight weeks after I was diagnosed with relapsing remitting MS. I was just about to start Avonex (Beta Interferon) and I was pretty anxious about stabbing myself in the thigh with a needle. Anneka was very reassuring and we had a laugh over her quirky pens.
Did you have any concerns about the appointment?
I didn’t want the treatment side effects!
What were your first impressions?
Anneka was very professional and clearly enjoyed her job.
Were you surprised by any of the treatment options you discussed? No. Before meeting my MS team I attended a day of lectures set up by University College London Hospitals. I realised that different specialists had different opinions on how to manage the condition. I understood then that I must decide myself how I’d like to be treated so I can make a decision with my MS team.
How was the appointment? Anneka was absolutely lovely and very supportive. She demonstrated the injection on a model and then watched me complete it on myself. It was like a supportive friend egging you on before a bungee jump - you know that nervous energy.
How often do you see each other?
I see an MS nurse once every six months and Anneka occasionally.
How helpful have you found having an MS nurse?
Extremely helpful. An MS nurse can give you more time than a consultant and can answer any questions you’re too embarrassed to ask. My MS nurse is a rock in an ever-changing NHS.
Sum up your MS nurse in three words
Informative, mindful and influential.
What difference has your MS nurse made to your life?
My MS nurse has made me feel more comfortable with myself and has given me more confidence to manage my condition.
Anneka on Tomas
When did you first meet Tom?
Tom rang our NeuroDirect helpline three years ago. He had been diagnosed fairly recently and was having difficulties with work and home life.
What was the first appointment like?
I listened to Tom, allayed some of his fears and we developed a plan to help overcome them.
What were your first impressions?
I thought he was a really sweet, friendly guy and a bit lost with his new diagnosis. He just needed a little extra support and education to learn how to handle his problems.
Has your relationship with Tom changed over time?
As Tom has learnt about his condition, we’ve needed to have less contact. But Tom knows he can call us whenever he needs to.
How important is it for somebody with MS to have regular appointments with their nurse?
I think it’s a vital part of managing their condition. It can be hard to ask for help if you’re not linked to someone. It also means we can review Tom’s needs regularly and monitor his treatment.
Sum up Tom in three words
Brave, fun, lovely.
How can a person with MS make the most of their appointment?
By keeping track of changes in symptoms or any other problems. Then we can make sure you’re on the right treatment path. And write down questions as they come to you so we can answer them for you during the appointment.
How important is it for somebody with MS to have a good relationship with their nurse?
It’s an absolute must. Some issues can be very difficult to talk about, especially with a stranger, and developing a good relationship makes this easier.
What changes would you like to see for MS treatment?
I want people with MS to become empowered by knowledge so they can have more informed control over their care.